Copy of post to a Yahoo Amputee Support Group, Saturday 06 August 2005, 10.06am; posted by an amputee, for other new amputees who look to the internet for advice, support and encouragement.
AMPUTEES, PROSTHETISTS & RESPONSIBILITY
Hi, here is my 2 cents worth regarding 'us', 'them', and our 'bits'.
Please bear in mind that I am an above knee amp and my opinions are based purely on my own experiences.95% OF QUESTIONS SHOULD/COULD BE ANSWERED ONLINE BY A PROSTHETISTWell, yes and no. Could be, probably yes. Should be, I would swing more to the no side there. Although most of my information comes from technical sites regarding the mechanics of the bits, and the different options out there, my life-information comes from other amputees. When I got my first leg, it was kind of like : here (a socket), here (a knee) and here (a foot) - good luck and bye for now then. As a new amputee, how do you know what to expect? You get this heavy equipment, and for all intents and purposes, there is no way you can imagine that lugging something like that around could be anything but uncomfortable. So you resign yourself and try to cope as best you can. How can you know any better? The prosthetist says "how does it feel?" Where is the handbook on how to speak with this professional and how do you know what an acceptable level of discomfort is? Unless of course you are lucky enough to run into another veteran amputee who you can chat to like a 'normal' person....
THE ART OF MAKING PROSTHETICSWhen I first visited my prosthetist (his name is Marco), he spent most of our scheduled hour sitting with me, just explaining everything. This was NINE YEARS after my amputation. I learned that I had a quad socket. I learned where my ramus and ischium are. He explained how the socket is designed, and how the prosthetist has to really tweak it right at the end to ensure a personal and proper fit. That's when he called it an ART. And it made sense to me. It is terrifying that any prosthetist can approach his job with any other attitude. Al Pike (American CP) says the new generation of prosthetists are relying very heavily on the latest technology. The 'art' of making prosthetics is being rapidly lost, and new amputees won't know any better.
GOING HOME WITH A TEST SOCKET THAT DOESN'T FITHuh? That is just crazy. If it hurts in the rooms, then be damn sure it can only get worse. I can see Marco's frustration levels rising with me sometimes. He'll say "how does it feel", and I will say "I'm not sure". And quite honestly, at that point, I really don't know. If it's a new socket, the pressure points are different. Heck, how am I to know if that's where it's supposed to push me. So he says "walk". 10 minutes later, same question "how does it feel?" Me - "I'm not sure, but it's pushing a bit here". Marco - "walk". And he bundles me out the door of his rooms so I can walk properly, even if I don't want to. This "walking-and-tweaking" can take anything from 20 to 50 minutes. And trust me, if the socket is not right, after walking non-stop for this length of time, you will know if it's going to be a problem. And Marco won't let me go home with the socket if it starts to make me sore.
In defense of prosthetists, sometimes we are so eager to take our new leg home, or so tired of the to'ing and fro'ing to try and get it right, that we are not completely honest. These people rely completely on us when it comes to final fitting. They can't 'feel' for us. So in short, if you go home with an ill-fitting socket, the blame must sit (most times) on your shoulders. We need to learn
how to say NO this is not right, I won't manage. Period.
Rule of thumb - if it's sore, it doesn't fit!
THE ONUS IS ON YOU TO GET EDUCATEDThis is sad but true. In Africa, there are no 'qualified' peer visitors, no healthy support groups. Nothing. It took me a very long time to realise there was even such a thing as getting myself educated. We need to take an active interest in our disability. This is, after all, a problem we will have for life. A prosthetist doesn't have the time to sit for hours explaining every detail to his patient. It's just not practical. And I am sure that if you visit your prosthetist with questions and suggestions that are intelligent and up-to-speed (if not on the same level as his), they are more inclined to listen to you, and share information that you may otherwise not have received.
I am like a sponge now. Sometimes I hurtle off in the wrong direction completely and Marco just smiles and shakes his head. More often than not, he wins. But I come away more empowered and feeling more in control of my own life. And I think Marco appreciates that in me.
SOCKET VERSUS ALIGNMENTThe alignment of the knee and the foot with the socket is almost as important as getting a good socket fit. I have had a perfect socket, changed the knee, and been crippled the next day. If the prosthetist hasn't done a lot of work with a particular knee, then chances are that when he aligns it, it's hit and miss. Could it be that our sockets are not too bad, but the alignment throws the whole thing out of kilter? I think this is a distinct possibility.
There are some dreadful prosthetists out there, and also some superstars. However, we, as amputees, need to start taking responsibility also. If you are lumbered with a painful prosthesis, it's up to you to make it right. If this means yelling and demanding, or being more honest, or actively seeking out knowledge, or refusing to go home with something that doesn't feel right, do it. But do something. Do something. Both prosthetist and patient rely on eachother to get a comfortable and functional limb made.
You may have been a victim of some cruel twist of fate, but that story is over. It's time to move on as the master of the rest of your life. It's SO do-able!!
Like Marco says "there's only so much I can do Ally, the rest is up to you". (Damn, it would be so nice to lump him with my burden and sit back waiting for him to do miraculous things).
POST SCRIPT : I think it is shameful that new amputees in South Africa are not offered EVERY avenue of support, education and therapy as a matter of course. Some receive NOTHING. Wham-bam-thank-you-mam comes to mind....but at least someone walks away satisfied in that scenario!
